time warp

Anybody who has known me for any length of time knows that I am the world’s worst at dates and times. This is a neural defect I can’t blame on Lyme. It’s also not ADHD, nor is it carelessness. I could blame it on falling out of a tree at the age of seven. My head cracked like an egg on the cement driveway below and I was in a coma. I am deaf in my left ear from that fall, and I like to believe that the very tiny area of the brain that processes dates and times was also damaged. Otherwise, my inability to remember dates and times is just pathetic.

My issues with this go waaaaaaaay back, and have been a family joke since I can remember. Mom often said I would be late for my own funeral. I have a tendency to forget about the month of February. Don’t ever ask me what the day and date is. Although I have a great memory for details about people and things that happened, like how one cold spring night in high school I was drinking Jack and Coke with friends (I could name them, but you know…) lying on the hood of a car parked in an undeveloped cul-de-sac  listening to Peter Frampton’s “Do You Feel” for the first time, but I can’t tell you off the top of my head for certain which year Katie graduated from high school (it was 2004 or 2005, so I do have it narrowed down.) It was a source of irritation to my ex that I could never quite remember our anniversary, probably because it was in February.

I don’t do this on purpose, or for attention. Yes, I have employed many of the methods I’m sure you could suggest for me. I’ve had calendars, alarms, reminders, and sticky notes. I’ve worn rubber bands that snapped at my wrist. The problem is that I can look at the calendar and see events, birthdays, and appointments, and ten minutes later it is all gone from my brain, like it never was.

This gives my life an element of mystery, for sure. My bewilderment is genuine, and my surprise at missing something is never feigned. I’ve long since given up being embarrassed about it.

Sometimes I’d love to see an MRI of my brain while questioned about dates and times. I’m fairly certain there would be very little activity. At least I hope that is what it would show, because it’s not like I want to be this way. For me, it truly is a form of brain damage, the area of time and dates a blank canvas sparsely spattered with random dates that I do remember.

There are many stories about my inability to get dates straight. I can remember a few, especially the epic ones. The most epic, the one I hate to tell, is the time I managed to score Prince tickets when he came to Denver for two nights. The tickets were something like twentieth row seats and cost over $600, because we invited another couple to go with us. I’m guessing a lot of you can see where this story is going. We headed down to the Pepsi Center the second night, because I was sure that was the night. It wasn’t. Honestly, I was surprised they took it so well. Also surprised I didn’t get divorced over that (although it does show the level of disfunction in our relationship that I didn’t forward any info to my ex. It was a control thing between us that grew worse and worse).

There was the time I missed a mini-reunion with high school friends because I got the night wrong. I think I even argued with them that I was right. I don’t do that any more, thank goodness. No, I accept this brain fluke and try to make sure it doesn’t happen too often. I’ve also learned to ask my friends for reminders, and I always check to see if businesses send reminder texts for appointments.

Technology has become my best friend for this problem. I’m going on vacation with my friend Laura in March. Fortunately for me, Orbitz and Airbnb update my calendar for me, reducing the risk of entering the wrong dates. Yes, I do that quite often. Another quirk of my date deficiency is that a day or date that is wrong will get stuck in my brain and won’t move, like a popcorn kernel wedged between two back molars. That’s something that really drives Katie crazy. “No, mom, I already told you four times, it’s next Saturday, not this Saturday!”  But Laura , bless her, reminded me to send her all the reservations and dates so she can double-check to see if I’ve screwed up and enter them on her own calendar.

Sometimes I don’t know why friends put up with this nonsense. Maybe if you are aware of it you simply accept it as a quirk and adjust accordingly, like Laura, or get annoyed and needle me, like Katie. I’m grateful the people in my life have accepted this foible of mine and I’ll gladly accept nagging, teasing, and constant reminders if it means I won’t forget.

There must be other stories, just like there are other stories about my deaf ear. If you remember any, I’d love to hear them. I’ll probably remember the memory, but not the date and time. And please, if I ever make plans with you, put it on your calendar and shoot me a couple of texts.

 

 

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balancing act

I got my booster shot yesterday. I’d forgotten how much each vaccine stirs up my immune system. It’s not major, not in the context of Lyme, but it is just one more insult to my body. Sometimes I get sick of always monitoring my health. Not in the “I take vitamins, exercise, eat right, and get a good night’s sleep” way, but a daily assessment of what is going on with my body. There are the decisions on which supplements to take to keep me on an even keel.  More decisions on which herbs to have for the co-infections to keep them in check. I often have to figure out what else is going on, too. Is my digestive system crap today or am I good? How is that stupid chronic cough that is directly tied to my gut going? Is my liver going to protest from endotoxin overload today? It’s exhausting, especially when compounded by the threat COVID and  reactions to vaccines.

I am not against vaccines. On the contrary, with my immune system, I require them. I just wish they weren’t one more thing to upset the delicate balancing act of staying well and stable. This is the norm for most chronic Lyme patients, always putting out fires just to have new ones pop up. I’m trying to think of another disease that matches the sheer scope of systemic problems. I had to look up the systems of the body and there are ten: skeletal, muscular, nervous, endocrine, cardiovascular, lymphatic, respiratory, digestive, urinary, and the reproductive system. On any given day, I can have problems with four or more of these systems. Not huge, life-threatening problems ( I don’t think!), these are erratic, maddening shocks that mentally and physically wear me down.

But getting COVID could be very serious for me, so I take the vaccines and try and figure out how they affect my body and then I try to regain my balance.

That brings me to another balancing act: the CDC’s handling of COVID. They have managed to infuriate nearly everyone with their ever-changing guidelines and recommendations.

I’ve been mad at the CDC for over six years now. The CDC has let me down at nearly every level during my illness. They have suppressed research that could help me and thousands of other Lyme sufferers. They deny the existence of chronic Lyme and actively go after physicians who will treat chronic Lyme. They have knowingly undercounted cases of Lyme disease. In the past several years, they have grudgingly admitted that they undercounted and are slowwwwwly starting to recognize and collect data on chronic Lyme cases.

This puts me in a quandary when it comes to COVID. It is difficult to put total trust into an institution that has so clearly failed me. I have to remind myself that COVID is different. There are many, many scientists and pharmaceutical companies working with the CDC to figure out vaccines, tests, and public policy. But there are just as many who aren’t, and there are politicians using COVID for political points, not for the public good.

I have to remind myself that the CDC is a big, sprawling entity with around 15,000 employees whose main goal is public health and safety.  Lyme disease is one tiny part. Yet there are troubling signs that indicate the CDC has become more and more compromised by politics, pharmaceutical companies, insurance companies, and rifts in the medical community itself.

In the age of COVID, this influence is particularly noticeable. During TFG’s tenure, the CDC had to tailor their statements and recommendations to align with the administration’s views. Now we have a less hamstrung agency that nonetheless continues to get the tone wrong. We all get it: this is a new disease with very little data to go on. We don’t know who is vulnerable or how to successfully test and vaccine everyone. Protocols and recommendations change with both new strains and new data that informs new guidelines.

All of that leaves most of us exhausted, grumpy, and unsure what to do. They are trying to balance public policy to keep businesses and schools open while protecting us. But who is their real master? Their recommendations are being subverted at state and local levels, often kowtowing to political pressure rather than public good.

Lyme disease faces similar challenges. Physicians in some states have been criminally charged for treating chronic Lyme patients. There is a constantly changing narrative on what it is and how to treat it. I know I get extremely angry at the lack of a consensus about diagnosis, treatment, and outcome. At the same time, I am denied insurance, disability, and treatments because they have been deemed by the CDC as not real.

This leaves Lyme patients distrustful of their advice and ripe for scams and unproven, sometimes dangerous “cures.” I realize this dilemma aligns with certain arguments posited about COVID, and therein lies the danger of the insidious pattern of science denial. If we had research funds going into Lyme for the past thirty years and the CDC kept us updated with their best recommendations, maybe I wouldn’t have this distrust. If powers behind the CDC allowed the agency to operate on the basis of protecting public health above profits, egos, and politics perhaps we’d be in a better place with COVID.

In many ways, I feel their balancing act is much more difficult than mine, because ultimately, I have placed myself outside the system and I am the one in charge of my health decisions. I try to base those decisions on facts and scientific evidence, but often times there are none, not because Lyme is a new disease, but because there is a willful, systematic denial of the existence of the disease. Huh. Perhaps our efforts are more alike than I thought.

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holidays and opinions

I hate it when people don’t believe what I say. When I say something I don’t fuck around with double meanings or hidden codes. Sometimes I do tell people what they’d like to hear, especially about my health (sure,I feel good right now)  or how they look or feel. This rant pertains to other things. If I say something doesn’t bother me, IT DOESN’T BOTHER ME. Trust me, you’ll know if it does.

The more puzzling question is why people distrust what I say in the first place. There might be some form of communication they learned at an early age that I didn’t get. At any rate, it drives me crazy, both with Lyme and with life. It’s also exhausting to feel that I have to re-explain once again, that yes, this is how I feel.

This spills over into holidays, mainly because of our obsessive mania that everybody “have a good holiday” as if there is a one-size-fits-all formula for that. All holidays are loaded with baggage, but for most of us, none more than Christmas. Over the years, I’ve dropped off celebrating most other holidays. Easter? I’m atheist, so that one was easy to let go. July fourth? Other than deviled eggs, not much I miss one way or the other.. If we had children around, things might be different, but that’s a whole other blog topic. Katie’s theory is that if you don’t have happy Christmas memories during your childhood and teens, you spend the rest of your life chasing the dream. She may be onto something here.

When I was little, holidays were celebrated, but not excessively so. I could always count on getting a few things that I really wanted. We had cookies, and a Christmas dinner, but nothing over the top. I remember feeling happy and loved. As the person in charge of holidays while Katie was growing up, I tried to to the same. I must have done that well, because Katie has mostly happy memories about Christmas, and for that matter, all holidays.

Because I was the one in charge of holidays, I got to do what I wanted. That may be the key to having good ones. I took great pleasure in cleaning the house and setting up the decorations. Aside from arguments about lights and the excruciating process of watching the ex pick out a tree (we solved that one by going artificial), I was free to pick and choose the rituals I enjoyed (midnight mass? No thanks. Waiting until after breakfast to open presents? Nope.) I continued lots of traditions long past their childhood origins and my divorce simply because I liked them. Katie enjoyed the fruits of my labor, but part of that was I didn’t make her do them.

The onset of Lyme brought about the biggest changes in my celebrations since my twenties, when I moved out and set up my own household. Fortunately for me, those years dovetailed with years that Katie worked every holiday. Kennels never shut down. Dogs need to be fed, medicines given, and kennels cleaned. Katie volunteered to work those days and we adjusted to my being ill and her working holidays. The first year after I was diagnosed, I spent Thanksgiving in my pajamas and robe, too sick to go anywhere, cook, or even care. I made Thanksgiving dinner a week after Thanksgiving, and it tasted exactly the same as if I had made it on Thanksgiving Day.

That year, we had Christmas two days before. I managed to get up the Christmas tree and wreath, but it certainly wasn’t a typical Christmas. Once again, the presents brought as much joy as if we had opened them Christmas mornings. Not having up all the decorations didn’t diminish the joy of seeing the Christmas tree lights and the wreath on the door through the season. It was a revelation. After that, we just rolled with it. A few years there were very few presents, just because it was too much for me to shop and wrap,. Instead of being sad or depressed, I found I liked the freedom. To be able to watch movies in my jammies and not worry about pleasing anyone but me was exactly what I needed when I was so sick.

Now I can enjoy Christmas however it turns out. I am very fortunate to have a family that wholeheartedly endorses this. Dad doesn’t care for any holidays, including his birthday. He suffers through them to make the people around him happy. There is a place for this, just as there is a place for respecting his wishes. If someone close to me really loved celebrating July Fourth, I’d make potato salad, deviled eggs, and ham and enjoy doing so.  I’d go see fireworks and get a thrill out of seeing them. On Halloween, I’d happily decorate the porch and hand out candy. I wouldn’t go to church for Easter or any holiday, but you get my drift.

Since Lyme, I’ve come to embrace my non-holidays. I feel positively smug when I hear how exhausted people are from endless rounds of shopping, parties, and family obligations. If you love doing everything and everybody’s happy in your world around the holidays, good on you. Enjoy them and recognize that there are lots of people who are perfectly happy NOT doing all those things. Katie, Dad and I give each other things all year long. We go out to eat when we feel like it, and I’ll cook a nice dinner whenever I want to.  And please, when someone (ME!) tells you something doesn’t bother them, try to believe them.

 

 

 

 

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crosswords

I love crossword puzzles. My friend Kathy Fernandes got me hooked way back in 1978. Ever since then they have served as faithful touchstones in my daily life. The Daily Texan, the Houston Chronicle, Austin-American Statesman, Lubbock Avalanche-Journal, Winston-Salem Journal, Raleigh News and Observer,  the Rocky Mountain News and Denver Post, for years I worked the crossword in the paper we got wherever we lived.

I remember grabbing the Daily Texan as soon as I got on campus and sitting in the Student Union before classes. I remember working them in the evening the years before Katie. I remember working them while Katie napped on my lap. Later, she tells me that one of her earliest memories is “shhh, mommy’s working the crossword.” Since going online, it’s my early morning ritual with classical music and a cup of decaf (an early sign that I’m getting old, someday I’ll work the crossword with gruel dribbling down my hairy chin).

When paper newspapers became too expensive, I switched to working crosswords online. I subscribe to the NYTimes and Washington Post and work their daily crosswords. On weekdays both puzzles generally take me less than 15 minutes. Monday through Thursday, I race the clock, trying to get each one done in less than five minutes. I often don’t read most of the clues, just start filling in either across or down. Fridays are more difficult. Saturdays are the hardest, and sometimes, maybe once or twice a month, I look up clues online. Sunday puzzles have themes and tricks: rebuses, puns, quotes, tricks, or circles with additional clues and/or words.

One of the most important things crosswords do for me is give my days structure. The schedule changes, the habit does not. If I can’t work one, there is a sense that the day is not complete. When I was at my sickest, working the crossword became an accurate barometer of my neurological state on any given day. It still is, although the difference is much subtler, a matter of grasping for a word for a bit longer.

Lately I’ve added la crucigrama de El País. For those of you who don’t know, I’ve been learning Spanish. I am now at the intermediate level, a bumbling high school junior at the end of her second year of Spanish. Those early puzzles were terribly hard at the beginning. They are still hard. Armed with my dictionary, I painstakingly try to solve the clues. If I can’t get the whole word (hint for Spanish puzzlers, a lot of words start and end with “a” or “o”), I resort to clicking letters on the keyboard using the Wheel of Fortune strategy (a,e,i,o,u,r,s,t,d,p,l,m,m,b,c). Finally, in frustration I tap every other letter until I get the right one. As my Spanish has improved, so have my skills. It’s interesting to see that the creators use some of the same tricks in Spanish puzzles that English creators use, like the ones listed above. The El País puzzle creator has a fondness for clues that shorten the given word ( ¿Asombroso? muy poco.) They also have filler words, the ones that all puzzlers know because they have the right combinations of letters, like “oreo” in English puzzles. These take me around a half an hour after four months of hard work. I believe they are increasing my Spanish language skills, forcing me to learn context, grammar, and usage.

I love almost all word games, but many of them involve other people. The beauty of crosswords is that they can be a solitary habit at one’s convenience or a group effort. We used to have crosswords laying around on beach vacations, someone filling in some of the clues, someone else filling in others. I get texts from friends who crossword, asking about a clue or a theme.  I’m sure there is a much broader community that I could be a part of if I wanted to. However, I fall more into the solitary camp. It’s not a competition in that respect. It’s more of the quiet satisfaction of completion.

In Atul Gawande’s book “Being Mortal: Medicine and What Matters In the End“, he posits a theory that is eminently sensible to me. As people age and grow feeble, we should be asking them do what they do that makes life matter to them. It could be as simple as enjoying a bowl of ice cream while watching a ball game. When these things are no longer feasible, the person has most likely reached the point where they no longer wish to live. I’ve often wondered what my answer would be and haven’t come up with anything. After writing this blog, I realize it is my classical music/coffee/crossword ritual. When I can no longer enjoy it, I will have ceased to enjoy living.

Rather than being morbid, I find  knowing this baseline comfortable. As I grow older, where I live and how I live will change. The when and how may change (I may go back to pen and paper, perhaps, or start working them after my nap), but the ritual of settling in to solve a word puzzle will not. For what it’s worth, I see many more years spent happily puzzling, but, like a dog who stops wanting to take walks, the day I don’t feel like doing them anymore will be my signal that I am ready. Oh, today marks a change in music. From Thanksgiving until New Year’s, I listen to Christmas music. The ritual goes on.

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the future

I’m at an age where I’m thinking hard about what I want out of the backend of my life. Moving has only heightened the scrutiny, and the process is not one that lends itself to definitive answers. For some people that isn’t the case. They will stay where they are, basking in post-retirement bliss in a home they’ve paid off with kids and grandkids (and some with great-grandkids!)all living nearby. That’s supposed to be the dream, right? Not for all of us.

Dreams have a way of changing, or at least mine have. There was a time in my life where that sounded pretty good to me. I think it changed when Katie was twelve or thirteen. I’m not sure why, other than I was unhappily married with a daughter who adamantly insisted she was never going to have kids. At the time, I thought it was all a phase. Still, the seeds of change had been planted. As the years went on, I got divorced. Katie never changed from not wanting kids. I went to graduate school for writing (a big change in and of itself) and I got Lyme disease.

All future thought was on hold at my sickest. For six years, I thought of nothing beyond surviving through another year. Now that I am definitely “stable” (meaning  a random pattern of wellness punctuated by relapses), I think about the future. What do want to do with myself? I made a list:

  • Torture my dad with my presence for his remaining years (who am I kidding? Dad an Keith Richards will be here long after I’m gone. They’ll dance on my grave.).
  • Take care of myself. This includes having the time/energy to work out, cook, go to movies, have adventures with friends. It also includes lots of down time to relapse without feeling guilty.
  • Travel. I want the time and money to go see friends, to travel to Paris, or Palm Springs, or wherever to watch tennis, and to go and see the world. I may even spend time living in one of the places  part time.
  • Have a home base in Denver with Katie.
  • Write, write, write.

I suppose I’ll do all of this as long as I can and see where I end up. Ultimately, I’ll end up dead, of course, but that shouldn’t keep me from planning the future. If the present is any indication, I’ll be with Katie permanently at some point, subject to being “taken care of” by my daughter. As long as I don’t kick up too much of a fuss, I should be good there.

Some people might be shaking their heads at the things on my list, or the inclusion of Katie in my future. I’ve long given up on what people think of my relationship with Katie. I’ve pretty much given up on what people think of my choices in general. But the stuff with Katie goes waaaaay back. She established her “difficult child” bona fides by the age of three. I got plenty of advice over the years on how to deal with her, mostly from people who didn’t have a child like Katie. Don’t ask me how or why some of us end up with children who can’t or won’t conform to what an ideal child should be. A child who doesn’t care about pleasing you, or is simply different. Rather, ask me what to do about it, because unconventional children require unconventional answers. At her worst, I worried if she would want to live. At that point, making her to do dishes or go to school seemed pointless. My decision to let go of all those preconceived “shoulds” and “ought tos” ultimately proved to be right for us.

I still didn’t trust my intuition about other decisions, even though I knew deep in my bones that I was doing the right things with Katie.  We joke about our entwined futures, but neither of us envision future plans without each other in some form or fashion. For us, the immediate future holds a flip: I’ll be the one coming and going and making the home will fall on her shoulders. My gut tells me this is exactly what I need—what we both need—but I’m still settling into this decision.

Really, it wasn’t until Lyme that I have learned that I DO know what is right for me and sometimes those around me, often before I’ve weighed all the pros and cons. Interesting, isn’t it, that it took serious illness that completely shook me to my core to realize that.

Knowing intuitively what is best for me and actually doing it are different things. Nothing about planning a future is easy, even when you’re older. The process of stripping my life down to the essentials induces something akin to pure panic sometimes. Letting go of anchors like possessions and places may leave me feeling unmoored, adrift in a new sea that has tides and waves I’m not ready for. However, it is better than being anchored by those same things, firmly grounded where I don’t want to be, held down by them instead of freed. It’s time to let go and trust that I am more than things, and that Katie is perfectly capable and more than ready to create a home that also has a place for me, just as I have done for her.

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restless

I’ve moved enough times that there is a rhythm to each move. There’s the relief of deciding to sell the home and move. Then the flurry of activity necessary to get the house ready for selling. I had a head start on this house, because before COVID I had considered selling and got rid of a bunch of stuff. That was a great help. After that, there is the wait for someone to buy.

That’s where the rhythm sped up. I’ve never sold a home in a market like this one. It sold in three days. We only had one bid but it was the right one. Our realtor wisely negotiated for a sixty day close and an additional sixty day leaseback. Because the corollary for a hot seller’s market is a tough buyer’s market.

I really like our realtor. I hav known him for seven or eight years through swimming. He is a good swimmer, and I either swam a few lanes over in a slower lane or was lifeguarding while he swam. Showing up at a pool at 5 am, sleep tousled and in a bathing suit to voluntarily swim a few miles tells me a lot about a person. That’s how I knew he was a realtor, and it’s also how I knew I could trust him to be reliable and trustworthy.

I think it takes a certain type of personality to be a great realtor. You’re not so much as selling something as guiding someone through one of the most purchases most of us ever make. You have to get to know what the person wants, yet make it clear what they can have. You have to explain strategies and pitfalls and advantages and all sorts of terms. My daughter is a virgin home buyer, so a large part of our realtor’s job is to explain the whole process to her. Our realtor is pathologically cheerful and patient, and has done all of the above, and more.

So we have a contract. I’m working on all the problems of making repairs, which is always a hassle and has its own peculiar rhythm. In fact, everything about a move is a “hurry up and wait” kind of motion. Some days are spent worrying if you’ve done the right thing and other days are seemingly consumed in a flash with phone calls, appointments, and paperwork. If I add watching the Olympics or writing into the mix, it makes getting anything else done extremely difficult.

What I’ve discovered about myself is that I can no longer juggle multiple things and push through a hectic day without paying the price. I lose my train of thought on one thing when I’m interrupted and can’t get back on track. I fall asleep at eight pm and sleep until six but I don’t feel rested. What level of stress can I handle now? I guess I won’t know until I’ve tested the limits, and this move is proving to be the perfect situation.

I miss the rush of having a jam-packed day of chaos and knowing that I dealt with all of it. Katie and I were talking about the time she went back to her second semester of school in January 2005 and discovered that Pikes Peak Community College had a Zookeeping degree program. This was what she had been looking for. She withdrew from Mesa State, I came and got her, we drove to Colorado Springs, enrolled her in the program, found an apartment and moved her all within three days. I doubt I could do that now.

When we moved to this house I got the house in Evergreen ready between December twentieth and January fifth. Katie and I packed over 85 boxes. I also found a new house all before I left for Bennington, VT on January thirteenth for my first term of graduate school. I was still negotiating the contract on the shuttle bus from Albany to Bennington. When I returned ten days later, I had seven days to finish packing, close on both houses, hire movers, and move in February second. I know I couldn’t do that now.

This move is dragging out, though, because of the craziness of the market. I have started thinking about packing, but it’s too soon. Besides, I am getting rid of at least half of my stuff, maybe more. But that depends on where we move and how much space I will have and how much space Katie will have. Because this will be primarily her space, not mine. I’ll be a co-owner but not here for the day-to-day living. I’ll be in Tucson for a while, then I’ll be all over the place, I hope. Eventually I hope to live somewhere outside of the US for six months each year and travel to see friends/tennis tournaments/for pleasure for weeks at a time. It’s funny, that doesn’t seem daunting at all. Because I will have total control of my travel times, recovery times, and when I come and go. I won’t have to clean the house, or do yard work, or deal with all the everyday things that sap my energy.

The end result of all the chaos of downsizing my world will be worth it, though. A much smaller property which means much less upkeep. I’ll have a co-owner I can trust who happens to be my daughter. She is thrilled to finally be a property owner. A smaller payment, which means more money for living. And lastly, a great shedding of things from a former life. Time will tell if that will be liberating.

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Judgy

I try mightily not to be judgmental. In the effort to put myself in someone else’s shoes, I fail most miserably with myself. Some of the ridiculous judgements I make (only with myself): should you be doing this? Why aren’t you doing that? Do you really feel that bad? You’re just being [lazy, a drama queen, too soft, too hard, not serious enough, too serious] and more, every permutation a judgment on me.

It’s hard not to do this when you’re always navigating a chronic illness. Chronic illnesses like Lyme are floaty ephemeral things, randomly disrupting your life in dozens of ways. That makes it less real and concrete, unlike, say, arthritis, or diabetes, or an illness like cancer. In these illnesses,  the causes of those diseases are measurable by tests and the core symptoms never shape-shift and morph on a whim.

And Lyme, along with its co-infections, may be chronic, but it is mostly—and I fucking hate this word— manageable. And so I judge. I look at people I know who have far deadlier and scarier challenges than Lyme and all of a sudden my ability to see things as they are for me vanishes.

When I get in a judgmental funk, I often second-guess what other people are thinking. ‘Well, she was able to [swim, hike, write, clean, cook, shop] so she can’t feel that bad,’ ‘She was fine yesterday. How can she be sick today?’ Maybe they don’t think any of these things, but I think they do. I tell my self to stop it, but I don’t listen when I’m in this kind of mood. Like an overtired toddler, once I’m wound up, I can’t unwind.

I tend to second-guess myself, too. At least twice a week for the past six years, I wonder if I really have Lyme. I wonder if I am relapsing at all. You’ve felt pretty good for the past <day, week, month> my brains says. You’re probably not sick at all anymore, just goldbricking. Cool etymology, goldbricking. Look it up.

That’s when I catalog my current symptoms, the ones that make me doubt everything. Yet, they are the realest part of all. They may not operate on a schedule, but an aching liver, shooting pains in my teeth, a neck ache, sore feet, and muscle pains are concrete, solid things that, as much as I deny them, cannot be denied. Stoicism does not equal wellness. The other symptoms, like fatigue, or when I forget dad’s phone number and address, or what day it is, are much easier to judge as non-worthy symptoms of illness.

And so I scrutinize, picking at myself relentlessly. It starts from the moment I wake up and assess how I’m feeling. How bad is that headache I ask myself. Bad enough to not walk? You have to walk. I suppose if I am being generous with myself, I’d say that this state actually gets me to do things, regardless of how I’m feeling. I almost always begin the day charging hard, getting up early and getting as much done as I can. That’s because it could all grind to a halt at some point in the day. I’m okay with that if I’ve managed to accomplish a few things before the crash.

This has been workable during COVID. We all seem to have had a collective fever dream where ordinary life has hung suspended from the pandemic. Being judgmental took a vacation as we struggled to deal with isolation and fear.

Now that most people’s lives are slowly returning to ‘normal’, I’m certain that the critical cacophony in my head will increase in direct proportion to my perception that everyone else is moving on. And I will respond with the urge that I have to work harder and do more, an insane reaction when I think about it. But that’s just it, isn’t it? My brain becoming mushy with a relapse, my body betraying me once again. I’ll obsess about lottery tickets, fight the feeling that I am running out of time (for what, I don’t know), and worry that I need to write and do things to prove I am worthy, even while I am sick.

My therapist tells me things like, ‘be kind to yourself’, and ‘give yourself some credit’. Easier said than done. I don’t know why I’m harder on myself than on anyone else. If I knew me, I’d think I was handling a shitty hand pretty damn well. Maybe I’m harder on me because I do know me: my foibles, weaknesses, and bad habits. Lyme has a way of exacerbating the bad parts of me and obscuring the good parts. I need to keep working on things that matter to me because I want to, not because I’m struggling to define my self-worth outside of being a chronically ill person.

I have a feeling this is going to take some time. I’ll probably stomp around on my walks muttering to myself, trying to figure out how to accept that who I am is not defined by my illness, nor is it defined by how hard I work to show that I am not ill. It’s a stupid conundrum that is self-created. It will become one of those opportunities for growth that I have come to loathe.

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Even keel

I love the etymology of words and phrases. Yesterday, I wanted to say “on an even keel” in Spanish and struggled to explain what that meant. Two of the students are men in their twenties, and the instructor is a Puerto Rican woman in her twenties. Idioms are lost on younger people now (not all, I’m not trying to start a generation war). Many idioms endured for centuries, but the context has been lost. Not so for “on an even keel.” Boats still have keels, and sailors like them to stay even.

These days my goal is to stay on an even keel. That means different things to different people. When I was young, I didn’t know my mom’s devotion to order and structure kept our house on calm seas until I was older. All I knew was that when I left home at 17, my life was most definitely not on an even keel for a long time, both physically and mentally. It was difficult for me to figure out what I needed to have that sense of balance and stability.

College was one big choppy chaos. I moved often, had no firm schedule, and didn’t care. However, as school came to a close, I looked for a way out of that chaos, and chose marriage. I don’t know why I didn’t have the cojones to forge out on my own, but I didn’t, not back then. I think I wanted to be rescued, or share the burden, or some such nonsense. Of course, this did nothing but add more chaos. I don’t think I felt on an even keel until Katie was born. A newborn baby is hardly an even keel, but for me it was the first true source of stability in my soul.

Over the next years, I discovered how to create my own calm seas, both for Katie and myself. I learned that for me, making a home went a long way towards alleviating chaos and stress. Inside, though, I was still not on an even keel. I was constantly fiddling about in a vain attempt to make someone else happy. It wasn’t until I divorced that I realized I’d been off course for years and years and years.

Even after I got Lyme and was terribly ill, I felt more at peace than I had in the last thirty-five years. I think many times people mistake (or hope) that having things, or having a busy, scheduled life is the same as being on an even keel inside. They usually aren’t, as I suspect many people learned after this long year of COVID. Inner turmoil and unhappiness will find a way to burst forth, and if there is no deeper sense of balance and happiness, things can go south in an instant. BTW, “go south” is an interesting saying, with no clear source. Could be from Native American’s euphemism that to “go south” is to die, or from the notion that if you committed a crime in the 1800s, you could escape the consequences by “going south” and crossing the border into Mexico.

For me, Lyme gave me stability. I had no other choice, but it’s true. I had to find a balance to give myself any kind of life. A funny thing about a chronic illness: any pretense is stripped away, and if you don’t like what you see, you’ll never be on an even keel. I’ve worked extremely hard to figure out what makes me happy, what I can live with, and what I can change.

Your balance might look entirely different. I’ve known people who thrive on pressure and constant change. I’ve known people who have everything going for them and are never in balance. Being on an even keel doesn’t mean everything in your life is going well. It means you’ve gotten your boat in tiptop shape, you’ve learned how to navigate rough water, and you manage to keep your boat relatively stable, at least until you it calm waters once again.

Now that I have that straight in my mind, I can weather any storm. I can even find contentment where others would see nothing but a big old storm bearing down on them, with no chance of not capsizing.

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bowling pins

Lately I’ve been looking at my life as a set of bowling pins. The bowler is life, and when all ten pins are gone, the show is over. I like the bowling pin analogy, because when one pin goes, it tends to knock down the other pins. If the ball strikes hard enough at the right spot, a lot of them topple. Many people go a long time without having any pins knocked over. Their bowler tends to roll a lot of gutter balls, or the kind of rolls that make the pins wobble without falling down. My bowler came out with a wicked spin before I was even born, knocking out the head pin. I’ve managed to reset the adoption pin over and over throughout my life, relegating it farther to the back. The knowledge of being unwanted when I was born has become easier to bear as I’ve gotten older.

At the age of seven, my bowler knocked down about eight pins when I fell out of a tree and fractured my skull.  I managed to reset those pins when I came out of a coma with only the loss of hearing in my left ear.

After that, the bowler messed around for a good long time, knocking down a few pins here and there. Then I don’t know what happened, maybe the bowler took some lessons or something, because at twenty-one I was diagnosed with endometriosis. That knocked down three or four pins with every surgery and every new treatment, until I had all the lady parts taken out. The last surgery was when I was 42.

At each juncture, I was able to reset almost all my pins. By the time I got Lyme, I’d say I was at eight pins, ten being perfect health/life, and zero pins being, well, dead. Since then, Lyme has been the number one pin, with a shifting cast of health problems behind. I’ve started re-reading Dr. Richard Horowitz’s “Why Can’t I Get Better? Solving the Mystery of Lyme & Chronic Disease.” Not a very exciting title, but it’s jam-packed with information. Aside from bartonella, most of my miseries are the secondary infections and inflictions brought on by an immunocompromised body. Dr. Horowitz calls this ‘MSIDS’, or ‘Multiple Systemic Infectious Disease Syndrome’. Quite a mouthful for what is essentially a pretty easy concept to get. He believes that diseases like Lyme open the door for  parasitic or fungal infections, allergies, environmental toxicity, compromised immune function, and many others.

I’ve had all of these, labelled on the pins behind Lyme for varying periods of time. The grossest one wasn’t parasites, although that was definitely an experience. Note to all of you: deworming is not fun. No, the one that made me gag (literally) was thrush. My tongue and mouth were coated furry white with fungus. Most disgusting thing I’ve seen on my body. At my worst, I’d say Lyme and all of its shitty friends had me down to about four pins. I’ve reset many times in the last six years, although the amount of upright pins has dwindled to seven, maybe eight or so on my best days. That’s because I’m never completely well. There’s always some niggling symptom or problem.

The newest pin behind Lyme is not technically new. It’s a new name for a bunch of unexplained problems I’ve had since my early thirties, about the time I had my eighth surgery. I itch when I exercise. I’ve had an unexplained cough for over twenty years. I have random allergies, most definitely not seasonal, and sometimes I wheeze when I cough. I don’t know what it was, or is. The symptoms come and go, and have never been bad enough to incapacitate me. However, after I had the Johnson & Johnson vaccine, I had itchy, watery eyes, blurred vision, headaches, and itchiness over my body, plus a wheezing cough.

I read something on a Lyme forum about a ‘mast-cell storm’ after a Lyme sufferer had their COVID vaccine. This meant their immune system overreacted to the vaccine. At any rate, to calm a mast cell flare, doctors recommend using H1 and H2 histamine blockers. Sounded complicated, until I read more. Zyrtec and Claritin are H1 histamine antagonists. Tagamet, Pepcid, and Prilosec are H2 histamine antagonists. I was so miserable I bought some of both and took them. Within two days I felt much better, and I mean much better in general.

Is this mast cell storm a one-time thing, or something else? The information is, like Lyme, all over the place. Yes, it’s a real thing, called “Mast Cell Activation Syndrome,” or MCAS. And yes, there is a Lyme connection. But for me, these two little pills made a difference in those other problems I’d had for years. I’ll bring it up with my LLMD on my next visit to see if he’s had other patients with this.

Some people think this would be a failing of my doctor not to notice all these symptoms and put them together for me. I would say those are people who don’t understand how complex and perplexing MSIDs are. Part of my job is to help him by analyzing my symptoms and noticing patterns and unintended consequences, like taking medicines after the vaccine. Is it frustrating? Sure it is. But these kind of diseases are on the rise, so the model for patient-doctor-doctor-doctor relationships needs to change (I put a couple of extra doctors in there because Americans LOVE their specialists).

My bowler so far has been frustratingly competent, always knocking out a few pins. There have been no strikes, but there have been a few spares. It is inevitable that one day the bowler will roll a great, booming strike in my sleep—at least that’s what I hope. Because if I had my druthers, it would be when I am a ripe old age, after a fabulous meal. Some great sex would be nice, too, but then one can’t hope for too much.

 

 

 

 

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pot

Since I have been on the subject of herbs, I might as well talk about my favorite herb. I have a long and complicated relationship with marijuana. Sometimes she’s my bitch, and sometimes I am hers. Mostly it’s a solid, happy union that makes us both happy.  Since legalization, I’ve been able to choose what strains I want, much like going to a liquor store and deciding if I want tequila, rum, or scotch.

I smoked for the first time when I was twelve, with my brother and his friends, on a Tuesday night in Covington LA when my parents were attending the symphony. We stood in a circle in the driveway, and I remember that sense of being included with the older kids. It did nothing. The second time, I was thirteen, at the base of the dam at Evergreen Lake. It was fucking freezing, and the snow was deep. That time, I felt something, and I liked it.

Later that year I also had my first paranoid moment while high. We had smoked while caroling in Hiwan Hills. We ended the night at someone’s house on Meadow Drive, near Hiwan Ranch. Their parents had an open house night, and there was a nice spread of food. I remember feeling overwhelmed with the colors, the people, and the food. I didn’t want to talk to anyone, but I really wanted one of the rum balls. One of the grownups came up as I was reaching for my third or fourth one and started talking to me. I’ve never forgotten that moment of utter panic as I tried to form coherent answers to his questions.

Once I moved to Kingwood, I found a group of kids who liked to smoke and drink. I never smoked before or during school, nor did I smoke on school nights. On the weekends, I smoked whatever I could whenever I could. Here’s a fun fact: I never bought pot until 2014.  Another fun fact: I’ve never rolled a joint. In the  ’70s and ’80s provenance of supplying and preparing pot was a mostly male one. I’m sure some of my girl friends bought and rolled because they wanted to have it for themselves when they wanted it, but I was content to let boyfriends and other guys do all the work for the pleasure of my company (Ha! Totally doubtful, but I guess it worked).

It was when I went off to UT Austin that I really started smoking in earnest. My freshman year, I was high every single day except Christmas Day. Back then, what I was seeking was…I’m still not sure. Pot relaxes me, and shuts down the constant chatter in my mind. Kind of what alcohol does for a lot of people, but without the calories or hangover. I get horrible hangovers from not much alcohol.  After that crazy year (it was so much more than smoking pot. Things were consumed. Risks were taken. Stupidity ruled.) I worked to find balance. I went months, even years without smoking. I slowly gave up drinking. I cleaned up my lifestyle. When I went off to Bennington, I was an occasional drinker, and had decided not to smoke at all while in school.

Katie and most of my friends who smoke consider me an absolute flyweight when it comes to smoking pot. I say I smoked everyday, but that is one or two hits off of a pipe that wouldn’t even get most stoners a mild buzz. I don’t know if there is a term for being a cheap stoner, but I am one.

Then came Lyme. Fortunately for me, I had gotten a medicinal license back in 2009 and kept it up, more to make a political statement than any urgent need, other than an achy knee. After I got sick, I couldn’t sleep, everything ached, and I was depressed as hell. Katie took me to the dispensary and I got a daytime strain and a nighttime strain. They worked so well I never needed painkillers or sleeping pills. Of course, I was stoned 90% of the time, but I was sick 100% of the time during that period.

Right now, I am in a nonsmoking phase. It was too much trouble to worry about bringing anything to Arizona and I was feeling good. I have times where I wish I had some, but then I look at the map and see that I have to drive half-way across Tucson, and they only have eight strains, and the prices are astronomical so I decide I can wait. I may never go back. I may become an occasional smoker. I may smoke every day again. Like I said, we have a complicated relationship.

 

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